Help please but not sure what with exactly!

[lr2224]

My nephew is going to see a Pedeatrician (sorry about the spelling) on Wednesday. He has recently started secondary school but has always had behavior problems at primary school. Nothing that I would really consider as serious but my sister would get called in every so often because of it. I think it was the usual standing up when not supposed to, not putting up his hand before calling out, getting distracted so not doing his work, Since going to secondary school, it seems to have got much worse. She is constantly receiving phone calls from the school about the way he is behaving. He won't stay seated and can't concentrate, even in lessons that he absolutely loves. Today she got a call about the fact that on Friday he was walking round the class and kept getting up from his seat. Last Thursday he refused point blank to take his coat and gloves off in class.

At home there are constant battles as well with him not doing what he is told and nothing sustaining his interest for any longer than two minutes at a time. He can't settle at a task at all, he doesn't like doing what he is told, every night it is a constant battle to get him to go to sleep - he seems to get up ten times before actually giving up and going back to bed!

Every aspect of his life seems like this. When he had been at the new school for a week, he ended up going home to another boys house after registration because the other boy asked if he wanted to come and have some toast! They did return to school when the other boys mum got home and told them too.

The biggest thing is that he doesn't seem to get that what he is doing is wrong and he seems to be getting really down about it because he keeps getting in trouble. He says that at school he can't concentrate, even in the lessons he likes and he doesn't know how to behave. After getting in trouble in a lesson on Friday, the teacher kept him and another boy back and when the teacher called my sister today, she said that he honestly just didn't seem to get that there was anything wrong with what he was doing. It wasn't as though he found it funny at all - he was quite distressed by the fact he was in trouble. Nor was it as though he had any kind of remorse for what he did - he just doesn't seem to get it!

My sister has got a referral for Wednesday and is hoping that they can help in someway. She is really distraught because she just doesn't know what she can do anymore. She has been fully supportive of the teachers and has done everything she can to try and make him see that what he is doing is wrong but he just doesn't seem to get it. He just seems really down at the moment because he is constantly in trouble and doesn't get why.

We don't know what to do. My sister has said 'what if he is just 'bad'?' I can't believe that he is. At other times he is the most loving, caring child ever. If you are ill, he will want to take care of you, if something bad has happened, he will give you the biggest hug and want to make you feel better.

I don't know what I want to achieve by posting here but I guess can someone give me hope. Does this sound familiar to anyone? Also could anyone tell us what will happen when she goes to her appointment on Wed? Any advice or tips?

We are all so upset and don't know what to do. Thank you.

The other thing I should maybe say - don't know if it's relevant, but he seems to be pretty academic. Despite not working at school, he seemed to manage to do well in his SATS and internal assessments at the new school and has made it into the top set of the only subject they have been tiered at!

Hi Ir! Didnt want to let your post go unanswered. It is really upsetting to watch a child distressed because they fear to get in trouble and cannot help himself! Your nephew sounds really lovely. It sounds like you have concerns about his attention/ distractabilty and possibly his understanding of social rules or abilty to see the big picture (not realising that going out of school for toast was unwise).
I find it helpful to write a list of points or concerns in advance of appointments. Sometimes it is easier to give the list to the doctor, sometimes as a prompt for points that you wish to discuss.
Of course I do not know if your nephew has any sn and if so what, but it might be worth reading up Asperger syndrome.

From your description I would probably be thinking of something like Aspergers too. It sounds as though your nephew just doesn't get the social side of things. An analogy I read somewhere once said that it was like a typical adult being transported back to 14th century China and being expected to know the rules and conventions.

A high IQ is also quite common with AS.

I would suggest that your sister writes notes about her concerns (similar to your post on here). It's surprising what you can forget when you walk into the appointment room and your mind just goes blank.

What happens seems to depend on the area and the individual Paed. My experience of appointments is with pre-school age children so it might be different for older children, eg they might want to talk to your sister and nephew individually. Generally though, your sister will be asked lots of questions about your nephew's general development and any issues he's had.

Good luck with the appointment and fingers crossed for you that you get some answers.

Hi Ir

Sorry things are so tough for you all. I agree with the others, it sounds like it might be Aspergers. Writing a list of all concerns is a really good idea because the whole appointment thing can be very stressful. It also helps to create a picture of 'what is going on'.

There is a very helpful book: Coping A Survival Guide for People with Asperger Syndrome by Marc Segar - it may be a bit premature for this but, it certainly is helpful and insightful.

I hope all goes well on Wed and you all begin to find some answers.

Thank you for all the responses. I really appreciate it! Aspergers had occurred to me as well. When he saw the paedeatrician it was not mentioned though but he now has to see an ed pysch so maybe at this stage they might pick up on it.

The paed said that something certainly wasn't right and he suspected ADD. He now needs to see a ed pysch which the paed will call my sister about on Monday. The first one that he tried to contact called my sister but could not give her an appointment until about April. At the moment she is doing all of this privately as she is lucky enough to have BUPA cover through her work. They will cover this up until the point where she has a diagnosis. If he is diagnosed with ADD then they won't then cover it.

I also had a long chat with a friend of mine who works for an autism charity. She gave me some great and honest advice about the what will happen and what to do next.

My sister had contacted the form tutor who tried to call her back on Friday but she was in another appointment with my nephew (the paed also thought he may have a kidney problem so got it checked out on Friday - luckily he didn't), so she missed the call. Hopefully she will get to speak to him on Monday but basically she wanted to find out what to do from here. Should she speak to the SENCO pre-diagnosis?

I think our main concerns are that if his does anything naughty before he has a diagnosis, then will they try and suspend him. That would be awful and very unfair. Hopefully it wouldn't come to that. The school has been very helpful up to now.

My sister had a meeting with the school on Tuesday, prior to the paed appointment and she explained what was happening. His form tutor was there who he also has for science and he said that in his lesson he is well behaved but that he tries to break down the instructions for him in to short simple, direct instructions and that seems to work for him. After that appointment he was going to speak to the other teachers and see if they would do the same. We aren't sure what happened with that but my nephew did seem to have a good rest of week last week.

Sorry, I have just re-read this message and realised how all over the place it is!

Could anyone tell me what will happen next? Also what happens at these ed pysch appointments? My friend did explain all of this to me but I could do with it written down as its a lot to take in.

Thank you everyone!

hi there

I don't have any specific help to offer but I just wanted to offer sympathy/empathy to yourself and your sister and your nephew. It must be awful to not realise what is expected in certain situations, and to get punishment rather than understanding. And to see your son or nephew going through this. And to have had 'behaviour problems' at primary school but no-one offering help. (I do wonder why the primary school SENCO wasn't involved.)

It does sound a bit like Aspergers to me - I've recently been looking into it as it was alluded to by a psychologist talking about my ds2 (4 1/2 yr old). But fingers crossed the professionals involved in your nephew's case will be able to get to the bottom of it and suggest good strategies for everyone to use. It's good that at least one of the teachers has been insightful enough to make changes to the way they approach the situation (rather than expecting your nephew to fit in to their way of doing things).

Although I can't answer your questions about 'what happens next' I would definitely say it's worth talking to the SENCO now. It could be ages before your nephew gets a real diagnosis but I hope a good SENCO would offer help well before that.